February 18, 2022
VOR Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all people with
intellectual and developmental disabilities.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

Via Zoom - February 24th
4:00 pm EST, 3 pm CST, 2 pm MST, 1 pm PST

VOR invites you to join us for our 2nd nationwide Networking Zoom Meeting!
At this meeting we will talk about the shortage of DSPs- Direct Support Professionals- those people who work directly with our loved ones. What is going on in your state or region to address this problem, which has reached crisis levels in some areas? We welcome you to share with us your concerns, advocacy efforts, progress, and ideas concerning alleviating this shortage.
Please RSVP us at [email protected] by February 20, if you would like to attend. We will send the zoom link a few days before the meeting.

VOR's Legislative Initiative, 2022

Sunday, May 15, 2022
On Zoom
To be followed by Zoom meetings with Congressional Offices May 16 - 19

VOR Annual Meeting

Sunday, June 12, 2022
On Zoom

Due to the ongoing Covid pandemic and the continued lockdown of many congressional offices in Washington, D.C., we are holding our annual events online via Zoom again this year. We ask members to please mark the dates in your calendars.
More information on how you may participate in these events will be coming soon.
Just What Is the Medicaid Waiver?

What is the difference between the 1115 waiver and the 1915 waiver? What is the Katie Beckett waiver? What other types of waiver are there? Below are two links from Investopedia that define the Medicaid Waiver and the Katie Beckett Waiver (offered in some states).

National News:
Mothers of Children who are Black and Autistic Help Other Families Find Their Voices
By Haley Tenore, Cronkite News,
February 17, 2022
As a school administrator and teacher for years, Elizabeth Morgan long advocated for students with developmental disabilities. Then when her son, Eli, was diagnosed with autism at age 2½, she sought out research about families like hers – “specifically, Black families who had children on the autism spectrum” – but she came up short.

The available studies focused on patients who were “largely white, largely affluent,” Morgan said. “And then when we talk about the families … our voices were erased from that, too.”

The experience inspired her to obtain a doctorate in early childhood intervention with a focus on underrepresented groups. Today, she works to raise awareness about disparities in the diagnosis and treatment of children with developmental disabilities, championing kids like Eli.

“If we really want to support the inclusion of all children and all families, then we need to work to take those barriers down,” said Morgan, program coordinator for the Center for Excellence in Developmental Disabilities at the University of California, Davis.

This month, Morgan joined Benita Shaw, another mother of a son who is Black and autistic, at the African American Conference on Disability, hosted by the Arizona Center for Disability Law and the Arizona Center for African American Resources. The two spoke about their experiences and offered guidance to other families of color about getting the support and services they need.

About 1 in 6 children ages 3 to 17 in the U.S., or 17%, have one or more developmental disabilities, according to the Centers for Disease Control and Prevention. Those include autism (which affects 1 in 44 children), cerebral palsy, attention deficit hyperactivity disorder and others.

Although past studies showed that white children were more likely to get a diagnosis of autism than Black or Hispanic children, that gap has narrowed, according to a 2021 report funded by the CDC. But other research shows that children of color and those from low-income families still have less access to care and services for autism, and families of color report a lower quality of care.

Black children often are diagnosed later than other kids. Although autism can be diagnosed at 18 months or younger, a 2020 study by Washington University School of Medicine in St. Louis found the average Black child does not receive a diagnosis until age 5½, despite parents raising concerns with doctors.
That later diagnosis may prevent children from getting the resources they need, as a diagnosis is the key to unlocking accommodations and services, said Elizabeth Drame, a professor at the University of Wisconsin-Milwaukee who trains special education teachers.

Drame said the root of the issue is “clinicians and pediatricians who don’t perceive of autism being present in Black families” and instead diagnose a speech disorder or behavior problem.

The experience can be confusing for parents who don’t know how to navigate the system and are struggling to find someone who will listen, Drame added.

Racial bias and discrimination in health care is well-documented. One commonly cited study found that in 400 hospitals, Black patients with heart disease were given older and cheaper treatments than white patients.

These biases may be unconscious, but the consequences are just as negative, Morgan said.
“When people are silenced and they’re put off and there’s a history of that, they can recognize … when they are being treated in a certain way, specifically because it has something to do with their identity,” she said. “Whether or not their provider is intending that, it’s still being conveyed.”

In the Black community, such disparities have led to a hesitancy to seek medical attention, which can account for delayed diagnoses for a variety of conditions, including autism.

Support networks can help. At UC Davis, a group called Sankofa holds monthly support group meetings and training sessions for parents of Black children with autism and other developmental disabilities.

Drame said such groups have been a saving grace for many families.

“We found that they weren’t just emotional support networks. They were resource sharing networks, they were information sharing networks that families really benefited from,” she said. “They’re kind of like, ‘I don’t want to see another family struggle the way I had to struggle.’”

CDC and AAP Have Updated Their Guidelines for Developmental Milestones
This is the first update to the guidelines since 2005
By Nehal Aggarwal, the Bump, February 15, 2022
The American Academy of Pediatrics (AAP) and Centers for Disease Control and Prevention (CDC) have updated the developmental milestone guidelines for their Learn the Signs. Act Early program, which helps parents identify autism and developmental delays in their children. This is the first update to the guidelines since they were announced in 2005.

The goal of the updates is to make it easier for parents, caregivers and healthcare providers to catch conditions like autism earlier, as well as to give them a clear baseline against which to measure milestones. As part of the changes, the organizations also raised the percentage of kids who normally meet milestones from 50 percent to 75 percent, indicating that most young children are developing in accordance with their age.

In the new guidelines, the CDC added guidelines for milestones in 15-month-olds and 30-month-olds to help make the markers of social and emotional development clearer.
At 15 months, a toddler should be clapping when excited, hugging their dolls or toys and showing you affection with hugs, cuddles and kisses. At 30 months, they should be using words like “look at me” to show you what they can do. The organization also:
  • Identified additional social and emotional milestones as part of the checklists
  • Removed vague language to make certain milestones clearer
  • Removed duplicate milestones
  • Added open-ended questions caregivers can use during well-visits with their pediatrician
  • Updated tips and activities caregivers can use to promote development

Status of Federal Vaccine Mandate for Health Care Workers
From the Michigan State Medical Society, Thursday, February 17, 2022

On November 5, 2021, the Centers for Medicaid and Medicare Services (CMS) published the Omnibus COVID-19 Health Care Staff Vaccination Interim Final Rule with public comment period (IFC). The IFC requires COVID-19 vaccination for staff in specified workplaces. Shortly thereafter, legal challenges were filed, implementation temporary halted by a preliminary injunction, implementation reinstated for some states, and ultimately reinstated for the remaining states following the Supreme Court’s decision on January 13, 2022. These challenges and injunctions, along with mixed messaging, have created a great deal of confusion over who must comply with the vaccination requirement.

The CMS IFC requires Medicare- and Medicaid-certified providers and suppliers (“facilities”) regulated under the health and safety standards known as Conditions of Participation, Conditions for Coverage, or Requirements for Participation in Medicare and Medicaid to establish processes or policies for vaccinating all applicable staff against COVID-19. These facility types [include]:

  • Home Health Agencies
  • Hospices
  • Intermediate Care Facilities for Individuals with Intellectual Disabilities
  • Long Term Care facilities
  • Programs for All-Inclusive Care for the Elderly Organizations

Clinical and non-clinical staff at the above-mentioned facilities, including employees, students, trainees, and volunteers, are required to be vaccinated. This also includes individuals who provide care, treatment, or other services for the facility and/or its patients under contract and to physicians admitting and/or treating patients in a facility. And, until further guidance clarifies otherwise, all staff of medical practices owned by a hospital (or a hospital-affiliated entity). According to CMS, individuals who provide services 100 percent remotely and who do not have any direct contact with patients and other staff, such as fully remote telehealth or payroll services, are not subject to the vaccination requirements outlined in this regulation.

Years After Federal Directive, States Expand Autism Coverage
By Michelle Diament, Disability Scoop, February 14, 2022
More than seven years after federal officials told states that Medicaid must cover treatments like applied behavior analysis for children with autism, all 50 states are finally following through, advocates say.

Just this month, Texas became the 50th state to add autism services, including ABA, for children enrolled in Medicaid.

The move caps a years-long push by advocates with Autism Speaks to expand access to autism therapy to kids covered by the government insurer.

In a 2014 bulletin, the Centers for Medicare and Medicaid Services told state Medicaid programs that they must offer “medically necessary diagnostic and treatment services” to kids with autism. The services must be included in what’s known as the Early and Periodic Screening, Diagnosis and Treatment program, or EPSDT, a package of offerings that every state is required to provide children under age 21 who qualify for Medicaid, the bulletin said.
At the time, CMS said that it was prompted to act after receiving numerous inquiries from states facing legal action for denying services to children with autism who were enrolled in Medicaid. Many of the court cases centered on access to ABA therapy.

The CMS bulletin did not specify ABA, but officials said that the therapy was one example of the services that would qualify. Others might include speech and occupational therapy, personal care services and medical equipment, the agency said.

In response, some state Medicaid programs started to cover ABA and other autism services soon after the federal directive was issued, but others dragged their feet.

Families in the News:
Illinois - Families Plead for More Residential Care Options for Children with Severe Developmental Disabilities
By Mitch Dudek, Chicago Sun-Times, December 14, 2021
We missed this article when it was first published. It was brought to our attention this week by a VOR member who is currently going through a similar experience in finding placement for her son.

Parents desperate for help caring for and educating children with severe mental illness or other forms of developmental disabilities gathered Tuesday to demand an overhaul in the way the Illinois State Board of Education handles such cases.

Peter Jaswilko was one of those parents. He has no drywall left in his house.

His son, Kyle, 15, who is autistic and prone to violent bouts of aggression, demolished the interior of their northwest suburban Lake in the Hills home and regularly turns his aggression on his father and others in his life.

“I have been hospitalized numerous times with injuries. Just last week, I had a concussion. I was knocked out ... he continued kicking me while I was out,” Jaswilko said.

“Residential placement is our only option,” he said of his son’s need for round-the-clock care at a facility that can handle him. The local school district agreed, he said.
Jaswilko applied to all the places on the state board’s list of facilities that had been vetted and approved. Each application was rejected. They weren’t equipped; his son’s needs were too great, they said.

Jaswilko found a place in New York, but it’s not on the board’s list so the state won’t reimburse Jaswilko’s local school district for the out-of-state placement.

He’s seeking emergency relief from the state. If that doesn’t work, he’ll take his case to federal court.

Jaswilko hopes the issue is resolved soon.
The facility in New York that’s agreed to take his son said the teen could arrive as soon as Jan. 16.

But Jaswilko, a professor at Triton College, worries the spot will go to someone else if the board doesn’t agree to cover the cost.

“Till someone takes action and approves more schools, kids like Kyle will suffer, and families as well,” he said, noting his daughter is living with his parents because the situation has caused her so much anxiety.

Kids with Autism Struggle to Adapt to Adulthood. One Doctor is trying to Change That
By Noam Levey, Shots Health News from NPR, February 12, 2022
Alex is autistic.

And like many parents of children with autism, Alex's mother and father have spent years trying to find a doctor or school or therapist who could help.

"It's a little bit like hot potato. Is the school supposed to counsel me? Is the pediatrician supposed to counsel me? ... Am I supposed to figure that out?" said Dr. Mai Pham, Alex's mother. "I think he always believed we were on his side. But he could also see that we were sometimes helpless."

The U.S. has made major strides in recent decades in raising awareness about autism and other intellectual and developmental disabilities, which affect as many as 1 in 20 Americans.

Improvements in screening, new therapies and burgeoning specialty clinics have made available care that was unthinkable a generation ago. But the health care system is still failing millions of Americans from the time they are children, experts and advocates say.

Pham thought she'd be better prepared than most parents to find help. She's an internist and former senior Medicare and Medicaid official with degrees from Harvard and Johns Hopkins universities.

Pham scrambled to find help, tapping a wide social and professional network around Washington, D.C. The metropolitan area boasts the highest concentration of child and adolescent psychiatrists in the U.S., 10 times the level in some rural parts of the country, according to one analysis.

Yet, as Alex struggled, Pham said, their family was lost. Time and again, pediatricians, psychiatrists and therapists minimized Alex's symptoms or shuffled him to someone else.

That's a common experience, said Monica Adler Werner, a counselor who works with patients with autism around Washington, D.C. "The odyssey that parents have to go on in order to find what their children need is really a shame of our society," she said.

Long waitlists for therapy remain the norm nationwide. So are medical bills that can reach tens of thousands of dollars.

"We were lucky we could afford those services," Pham said. "We have health insurance. ... I had the kind of jobs where I could hop in the car once or twice a week and drive 50 minutes each way to get him to therapy."

Millions of Americans face even bigger barriers to care. Families in rural areas often travel hours for services. Many Black and Hispanic families face persistent inequities in the U.S. health care system.
Nationally, parents of children with autism are 10 times as likely to say they're "usually or always" frustrated in their efforts to get services, compared with parents of other children, according to a 2018 article in Pediatrics.

Training doctors to understand disabilities

Primary care physicians — a convenient option for many families — could fill some of those gaps if the doctors had better training, said Kristin Sohl, a pediatrician who teaches these skills at the University of Missouri. "We've got to make this accessible so that people can have access to what they need when and where they need it," Sohl said.

But many physicians feel ill-equipped to provide this care.

In one survey, just 40% said they were very confident that their care for patients with disabilities was as good as their care for other patients. Only about half strongly agreed that they welcome patients with disabilities.

Training remains one barrier. Even though as many as 16 million Americans have autism or another intellectual or developmental disability, the subject is a small part of the curriculum at most medical schools.

Another obstacle, Sohl and others say, is a tendency in American health care to simply refer patients to specialists. "It's so hierarchical," Sohl said.

Changing that has become Pham's life's work.
She quit her job at a major health insurer in 2020 to start the Institute for Exceptional Care. The nonprofit aims to overhaul the way doctors are trained and paid so they can spend more time with patients with disabilities, instead of rushing through visits because of billing pressures.

"We've made huge investments in the science and in some ways the clinical aspects of care," Pham said. "But we haven't thought about how to make any of that sustainable."

Pham said that this is particularly important because so many patients are aging — and developing medical conditions such as diabetes, heart disease and dementia.

"How you communicate to someone like my son or how you manage chronic conditions for him will need to be different," Pham said. "The health system hasn't thought about that."

Addressing the DSP Crisis:
VOR has been speaking out on the DSP crisis for years. We have been concerned that low pay and a lack of training and career objectives has been part and parcel of the system, especially in the private sector and Home and Community Based Services (HCBS). For decades, federal agencies, state councils, and national advocacy organizations have promoted HCBS care and rallied for funds to expand the size of the system while failing to address this underlying problem. In 2017, the President's Committee on People with Intellectual Disabilities produced a report outlining the crisis, but the federal government has failed to take any action to alleviate the problem in the years that followed.

The Covid pandemic exacerbated the shortage of qualified Direct Support Professionals, and state governments have been awarding one-time increases to care staff who remained on the job through the pandemic and signing bonuses to attract new workers, most often by using funds earmarked exclusively for HCBS services under the American Rescue Plan Act (ARPA). But these are temporary solutions, aimed at cauterizing the wound to stop the bleeding. There needs to be more. States need to find ways to increase the wages and training of the DSP workforce.

Meanwhile, the federal government and most national advocacy organizations have been working to support only DSPs in HCBS settings, leaving tens of thousands of professionals out of their proposed solution and putting the operators of private ICFs, assisted living facilities, and other non-HCBS facilities at risk of being unable to compete in hiring quality caregivers to serve their residents.

One great irony is that one of the most prominent organizations speaking out for increasing funding for HCBS services is also a provider, and has profited for decades building homes that rely on hiring a workforce at minimum wage or less.

VOR believes the solution must involve wage increases for DSPs that rise well above the minimum wage. We believe that all DSPs must be paid these higher wages for their services, not only those who work in HCBS settings. And we believe that DSPs need to be given better training and career paths, so that they may support themselves and their families and plan for a stable future.

The stories below illustrate some of the solutions, both temporary and long-term, the strengths and shortcomings of some of these solutions, and the need for a more comprehensive approach that doesn't favor DSPs who work in one setting over another.
Direct Care Work Is One Of The Lowest Paying Jobs. These D.C. Groups Are Trying To Change That
By Amanda Michelle Gomez, The DCist, February 16, 2022

LaToya Francis hasn’t paid rent since December of last year.

She usually struggles to afford the $1,250 in rent for her apartment in Northeast D.C., where she and her two kids live, but an unexpected need for a new radiator during the already expensive holiday season put her even further behind than usual. Her domestic violence survivor subsidy is expected to end soon, and she does not know how she’ll afford the $325 increase in rent payments. Just last week, her bank account had a negative balance because her phone bill’s automatic payment kicked in and she incurred overdraft fees.

“The amount that I get paid is just not enough,” Francis tells DCist/WAMU. “I’m trying to find a way to take a little bit from this bill and put [it] towards another bill — kind of rob Peter to pay Paul.”

Francis works as a certified nursing assistant at BridgePoint Hospital in Bellevue. She says she does the “the dirty jobs that nobody else wants to do.” She bathes, dresses, feeds, and toilets people who can’t do so by themselves.

Francis says BridgePoint pays her a minimum of $18 an hour for this work. To make ends meet, she also moonlights as a home health aide, another job that’s physically and emotionally taxing. She travels 40 miles west to Manassas, Va., for her second job, picking up as many aide shifts as she can manage outside the three 12-hour overnight shifts that make up her full time work at the long term acute care hospital. Between caring for her patients and her kids, Francis is exhausted.

“Thank God I have a supportive partner and a supportive family behind me because if not I’d really be drowning in my struggle right now,” she says.

Francis is part of a coalition of 20 groups — including local labor union 1199 SEIU, adult public charter school Academy of Hope, and various senior villages — calling on D.C. lawmakers to increase the starting wage for direct care workers to $22 per hour. Direct care workers include certified nursing assistants, home health aides, and direct support professionals who care for people who are elderly or disabled, either at their home or in long term care facilities like nursing homes. These workers earn just under $30,000 per year on average, according to the District’s state plan to the U.S. Department of Labor — the lowest median annual wage of any sector.

Direct care workers and their advocates say the increase will benefit people who are barely surviving financially, while also alleviating the sector’s labor shortage. Wage increases would also address racial disparities, since 87% of regional direct care workers are people of color, as well as economic disparities in a city where nearly 1 in 5 workers live in poverty, according to testimony to the D.C. Council by 1199SEIU.

Francis says a base wage of $22 an hour would be life-changing.

“It would mean I can afford to take a day off and actually use the vacation time that I’ve earned because my body just needs to rest,” she says.

Like many direct care workers, Francis has considered leaving the profession. The low wages and dangerous working conditions meant people quit in droves during the pandemic.

Maine DHHS Distributes Payments to Fund Bonuses for 20,000 Direct Support Workers
Official press releases from State of Maine agencies, February 11, 2022

The Maine Department of Health and Human Services (DHHS) announced that it is distributing this week the first half of $116 million in MaineCare payments to home- and community-based services (HCBS) providers to fund bonuses for more than 20,000 direct support workers. The second half will be distributed later in February. The bonus payments, first announced in November, are available through the American Rescue Plan and represent a major component of the Department’s plan to improve access to high-quality services that help ensure Maine people of all ages, including those living with disabilities and behavioral health challenges, can remain in their communities. The Department's plan has received full federal approval, bringing federal matching Medicaid funds to Maine for these bonuses and other elements of the plan. These HCBS services include a broad range of personal care, home health, and behavioral health, shared living, and community and work supports.

The $116 million allocated for bonus payments, based on registration and 2019 data, is part of DHHS’s broader plan to invest approximately $229 million in Federal Medicaid matching funds for Maine’s HCBS system improvement plan. This plan was developed in consultation with stakeholders, including providers and families. The plan reflects the consensus that the most immediate challenge facing Maine’s HCBS system is attracting and retaining direct support workers. As part of the HCBS system improvement plan, the Department is also creating a direct support worker council, developing career ladders, making worker certification more portable and pursuing other longer-term initiatives. The Administration has summarized these and other workforce initiatives in a report (PDF) submitted earlier this month to the Legislature.

Governor Mills’ Maine Jobs and Recovery Plan includes a slate of initiatives to encourage people to pursue health care jobs in Maine and strengthen the state’s health care workforce. This includes $4 million to provide scholarships and student loan relief to enable more people to become behavioral health specialists, long term support workers, emergency medical services staff, and other health professionals. An additional $8 million supports a program to help people who work in the health care field gain skills and advance with their employer. The Jobs and Recovery Plan also includes a $1.5 million recruitment effort, with $500,000 dedicated specifically to promoting direct support worker jobs, such as aides for older Mainers or individuals with disabilities.

The Mills Administration has taken a number of actions to support HCBS providers during the pandemic. The Department recently proposed to raise MaineCare rates effective in January for many home- and community-based services, accelerating higher rates initially planned for July 1, 2022 and supporting providers in increasing pay for direct care workers to at least 125 percent of the state’s minimum wage.

Minnesota Senate Republicans Propose Bonuses for Long-Term Care Workers
By Peter Cox, Minnesota Public Radio, February 17, 2022

The pressure is increasing to address record low long-term care staffing levels at the Minnesota Legislature.

State Senate Republicans outlined a proposal Thursday to spend $322 million on $1,000 bonuses to staff members who stay on in their current roles, as well as signing bonuses for those who decide to join the industry. The plan also calls for grants to cover costs of education and training.

"Our long-term care facilities, our assisted living [centers], our nursing homes have been just decimated by COVID and we are in a real crisis,” said Karin Housley, R-Stillwater. “They were in a crisis even before COVID.”

Operators agree staffing concerns existed before the pandemic, but they say the problem was made much worse by COVID-19 in the last year — and in part because the job market offers opportunities for higher pay for less stressful work. Some nursing home operators said they lost employees because of vaccine mandates.

Long-term care advocacy groups have estimated more than 20,000 open positions in Minnesota over the last six months. They warned nursing homes and group homes may close because they can’t provide a base level of care.

State Sen. Jim Abeler said the GOP plan uses general fund dollars to “begin to stabilize the industry, get some more people into it, and then try to reform it so we actually have a system that works.” The Anoka Republican added, “This is the beginning, not the end."

The Worker Shortage's Big Impact on People with Developmental Disabilities
By Monica Sandreczki, WBFO-FM, Feb. 14, 2022
Amanda Hayes is out for lunch with her parents at the Burger King in Canton. She’s 37 years old with curly brown hair tied back in a bun and bright
turquoise sneakers.

Her Dad, Ed, wheels her chair to the table. Amanda laughs as her mom, Carrie, helps her take a sip of chocolate milkshake.

Amanda has cerebral palsy and can’t feed herself or talk. Carrie and Ed love the noises Amanda makes. They call them her "happy notes," but worry she’s making less of them lately.

"This is probably the first time she’s giggled in two days. The depression. We walked in. She had her head down. She was shaking," says Ed.

Amanda lives in a home with ten people and requires 24-hour care. Outings like this are rare. Almost all activities for the folks in Amanda’s home have stopped. There aren’t enough workers to help residents leave the house except for doctors' appointments.

Agencies throughout the state have been operating with “less than skeleton crews” as one worker Monica talked to described it.

"Right now, we have a 25 percent vacancy rate in St. Lawrence County. Our vacancy rate in Jefferson has averaged been probably between 25 and 30 percent, but the last couple of years it's been as high as 40-45%, especially with COVID. We've come a long way, but we still have a ways to go," said Howie Ganter, executive director of the ARC Jefferson-St. Lawrence, which provides services and homes for people with developmental disabilities.

Ganter says these agencies have their hands tied. They can only pay what the state allows them to pay, which varies, but hovers around $15 an hour for non-profits and around $18 for state-run homes.

"These have become minimum wage jobs and these are not minimum wage jobs," said Rhonda Frederick, executive director of People Inc., which runs group homes and services in Buffalo.
Frederick has worked in the field for 40 years and says she and other advocates were frustrated throughout the Cuomo Administration, which delayed a cost of living increase for people who work in group homes for ten years.

"I don't know what the last administration was thinking, but certainly, we got into this workforce crisis because of that. There’s no doubt in my mind. We have wonderful people that leave this field, that want to work in this field, but can’t pay their rent or put food on the table for their family," said Frederick.

For agencies and parents, the solution is clear: increase wages for direct support professionals.
Ganter and Frederick are pleased that Governor Kathy Hochul proposed a 5.4% wage increase, plus a $3,000 bonus, but say there needs to be more of a commitment from the state and federal governments.

"It will have to be a combination of state resources and federal, but to get our staff up to a living wage, there has to be federal involvement," said Ganter.
In the meantime, Carrie and Ed Hayes are scared of what they’re seeing in Amanda’s larger group home.

"They’re changed, they’re fed, and they’re brought to the living room to watch TV. Then they’re changed, they’re fed and they’re brought to the living room to watch TV. That's all I see happen," said Carrie.

As Ed described it to Carrie, "I feel like our daughter is living on a farm. She’s fed and then put back out to pasture."

Connecticut - 20 Arrested During Protest Outside State Capitol
From NBC Connecticut News, February 17, 2022
Hartford Police said they've arrested 20 people during a healthcare worker protest outside the state capitol.

An NBC Connecticut crew at the scene saw several people blocking Capitol Avenue, during the SEIU 1199 protest.

According to SEUI 1199 President Rob Baril, 60 people participated in the protest.

This is the third time healthcare workers have protested and demand to be heard, according to Baril. The union has been protesting for approximately a year and a half, he said.
"This group of workers are determined to be seen and be heard," Baril said.

The healthcare workers participating in the protest work for people with physical and intellectual disabilities, according to Baril.

Washington - Opinion: Stop Chronic Underfunding of Services for People with Developmental Disabilities
By Stacy Dym, The Seattle Times, February 11, 2022
The author is is the Executive Director of The Arc of Washington State

Washington state legislators have ignored for decades children, youth and adults with developmental disabilities, failing to provide critical services to live full and thriving lives many take for granted.
Gov. Jay Inslee recognizes the problem and has a solution. In his proposed budget, the governor has prioritized funding to forecast how many individuals with intellectual and developmental disabilities are requesting services from the Department of Social and Health Services, and how many people are eligible and need community and residential services.

State legislators must embrace this long-overdue change for Washingtonians with developmental disabilities by amending Senate Bill 5268 to include full forecasting for all home- and community-based waivers under the Developmental Disabilities Administration and pass the bill this session. 

The problem is legislators refuse to include adults with developmental disabilities in critical budget forecasts that establish entitlement spending. These forecasts help set funding levels for vital services for everything from public education and Medicaid to child care and long-term care services for seniors in the community.

Developmental disabilities is one of the only social and human services left out of the forecast, which means nearly 12,000 Washington residents eligible for services are left stranded on a seemingly endless waitlist for critical services. Adults with developmental disabilities may be qualified for services, but they are not entitled to them — a crucial distinction because it means so many get nothing, and families carry the financial and emotional toll for the majority of their child’s life. 

This is bad for the economy when parents drop out of the workforce to care for their child who cannot get child care or after-school care that meets their needs, and it extends when students leave public education and enter an adult system of supports that is inadequately funded. Moreover, it leaves adults with developmental disabilities without any level of agency, independence, autonomy, or way to contribute to local communities, which is achievable, deserved and a human right.

This is not a fight over an arcane budget process. Excluding adults with developmental disabilities from budget forecasts has painful and tragic results in real life.

What's Happening in Your State?

Whenever you happen upon an article that we may have missed that pertains to people with I/DD, severe autism, intermediate care facilities, sheltered workshops, or other stories that may be of interest to our families, please send it to us!

We can't promise to use everything that is submitted (we often pare down our list stories each week from 15-30 stories down to a half dozen or so), but we will try to add them to the newsletter or our Facebook page as we see appropriate.

If you do come across any articles of interest, please send a short email with a link to the story to us at [email protected]
VOR Bill Watch:
[Please click on blue link to view information about the bill]


Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.
H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


S. 3417 - The Latonya Reeves Freedom Act of 2021 - This bill may be seen as the offspring of the Disability Integration Act from the 116th Congress. It misrepresents Olmstead, and contains provisions that would be harmful to the existence of ICFs, including a section that would promote lawsuits against larger congregate care facilities.

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 & S. 3238 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.
Direct Support Professionals:

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We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

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